Report of the DSM-V Neurodevelopmental Disorders Work Group

Post Reply New Topic

You've brought up an interesting point. For the benefit of others reading, so they don't have to go back and look for the item you're talking about, this is item "E" from DSM-IV:

"E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood."

You're absolutely right in that because we don't tend to display obvious signs of deficits, especially early in life, the deficits that do display are more often than not interpreted as behavioral or disciplinary problems rather than real neurological disabilities. As a result we are often dealt with in ways that are damaging rather than helpful. How often I have heard (of myself and my own children) statements like, "He's being manipulative. He knows exactly what he's doing."

The sad truth is, deliberate manipulation requires understanding of the powers of influence, which includes understanding not only how we influence others, but how they influence us. That is one thing we are clearly NOT very good at all. That is not to say we don't TRY to influence our surroundings. I believe we do, but I also believe the evidence that there is a deficit there is clearly demonstrated by the fact that we are RARELY successful at it. NT kids learn very quickly that throwing fits or using extreme passive resistance doesn't work well, so they learn far more quickly that they must develop much more sophisticated methods of influencing others. Those more sophisticated methods require developing intuitive understanding of very complex communicative abilities those with AS lack.

This, I believe, is why AS isn't always obvious in younger kids, but becomes more obvious in later years due to their continuing to insist that baser methods of affecting influence ought to work, in spite of the fact that those methods are generally unacceptable by society, and seldom get the AS child what he/she wants.

I can tell you from experience that many make the assumption that when behaviors like that persist, it must be because the child has been "getting away with it," and thus it is the fault of the parents. "The parents must be too permissive."

Really?

Hardly! If my wife and I are too permissive, then why do our own children and other children they know verbally express that we are TOO STRICT?

Further complicating our interaction with the world is the fact that because we appear so "normal" most of the time, when a "faux pas" is observed, it is almost automatic for others to assume we are just "being stupid." (By "stupid" here, I mean, "Doing things we obviously know better than to do."), when the truth seems to be that we really DO NOT "know better."

While I do agree that in many cases one can explain to others that one isn't stupid, but one DOES have certain deficits that appear quizzical in comparison with the vast majority of one's behaviors, and that we really cannot always help it, and get sympathetic reactions from many people, doing so can be risky. Quite often reactions are not sympathetic at all, but skeptical and not accepting. I've actually done it on occasion and seen obvious discomfort. A lot of people don't want to know, because it makes THEM uncomfortable, presumably because they think it SHOULD make us uncomfortable. It's like a double edged sword.

I talk to them about it anyway, if I think it's necessary for them to know. If they aren't accepting of at least something of a dialogue, I view that as their problem, not mine. As far as I'm concerned if they aren't willing to talk about and at least try to understand it, we aren't likely to "get along." Also, and even MORE important, if I never talk about it, how am I going to find those who are willing to sympathize and understand?

It is the fact that I WILL bring it up that is the reason I have a support system that is (slowly) becoming more and more effective with each passing year.

I think one could say it does if you're willing to interpret the following items in DSM-V broadly:

"2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors"

though I don't think the wording is specific enough. I think the new wording is so non-specific as to allow for excluding what have, up until now, been widely accepted as typical Aspie traits.

E.G. Tags in clothes having to be removed. Certain fabrics being irritable to the point of absolute refusal to wear them. Refusing to enter a room because of an odor no one else can smell, or because the light is too bright when no one else has a problem with it.

The interesting thing about this point though, is that DSM-IV doesn't mention sensory issues at all, though sensory issues are widely accepted to be a frequent sign of AS.

I suppose one could say that past patterns of diagnosing indicates that just because it isn't there doesn't mean professionals won't take it into account, and I'm not saying that's the case either.

What I am concerned about is that traits that are NOT there are easily dismissed by skeptics.

What exactly does "unusual sensory behaviors" MEAN?

Without specifics and examples, phrases like that can be interpreted in totally opposing ways.

It's for reasons just like this I think simplifying the criteria is the wrong way to go. Doing anything that increases the allowance for dismissing symptoms is, to me, the wrong direction, especially when the symptoms that are now easier to dismiss have been long demonstrated to be probable parts of AS.

Wow, never heard anyone else mention the removal of tags from clothing before, when I was little (3 or 4) I would always insist that the labels be removed as they always annoyed me. Guess I grew out of it.

Really? Oh yeah! Intolerable irritation from tags is quite common, though a lot of us do grow out of it. It's not that irritation from things like it are strictly AS of course. Plenty of NT's are irritated by similar things as well and also grow out of it. I think the difference though, is in a combination of the length of time it takes to grow out of it and the degree to which the reactions to these kinds of things are. My kids threw massive tempers over it, and they all still can't stand them. My eldest is thirteen and still cuts them out. I did as a child too, and remember most people other than my parents thinking it was odd.

Another similar thing like it took me a very long time to identify. All my kids hated being in car seats and threw fits over being strapped in, but quite often those fits were so bad we knew there was something else going on, but couldn't figure it out at first. It turned out to be their socks! If they were even slightly twisted, or had thick seems, it drove them crazy. It wasn't until they began speaking that they could tell us what the problem was! It made even short five to ten minute trips pure HELL!

This is where I share your concerns, but not so much in terms of what is currently there but by the fact that the "severity criteria" which should provide such details are currently not listed and it is these that will determine if the new criteria will have this problem or not.


Maybe, but still not actually eliminated as it would still be an example of lack in the social dimension.
Also, if you have multiple example for the same deficit there is a danger that someone who only has that one deficit gets incorrectly diagnosed with AS because the weight of that one aspect has been excessively weighted by counting multiple times.


I think here is where issues of definition would enter into it. Which I think is where you are concerned as the question is really whether AS is defined by the social or the emotional lack. To me emotional lack is a seperate issue for which we have ample of classifications and is not an intrinsic AS characteristic. So while we disagree, we also agree on this. This does change the criteria. To me it fits the concept of AS better, you disagree.


Sorry, I just don't see the problem here but then again I am not in the position to comprehend the source of your concern as it is based in the restrictive thinking of others.


I must admit that I might be placing too much hope in the as yet unstated criteria of severity which to me would be where a lot of the specifics should come in. Should these not do the job I am expecting them to then I would have to agree with you that things are oversimplified. I am still holding out for more details in the criteria.


OK what I was trying to say is whether DSM-V defines ASD in a way that you would disagree with. It now looks to me that most of your concern has to do with how they will be read by a biased reader. This is an area I am uncomfortable arguing about as I find it difficult anything than an honest and straightforward approach to the criteria.

IF I am reading you correctly here, I think you may have just summed up the reasons behind why we might disagree on most, if not all points.

You are correct. I am definitely concerned with how a biased reader might interpret the DSM-V. It sounds like (and please correct me if I'm wrong), you are uncomfortable arguing the points because you find it difficult to envision anything other than an honest approach to the criteria. (?)

First let me say that I'm definitely NOT saying that I fear dishonest approaches. (Though I also won't say dishonest approaches don't/won't exist, but I do think almost all true professionals are basically honest folks.) It isn't dishonesty I fear at all. It's bias due to preconceived notions based (possibly) on too little information and too little in depth study.

There is a reason for that fear. The reason is that I have experienced it first hand several times over. One Psychologist told us our son couldn't have AS because he didn't seem to have any particular "single" interest he talked about all the time. He didn't seem to understand that THAT particular specific IS just an example of something that fits. In a way, there is where including specific examples can actually backfire, convincing some that if the "symptom" isn't "just like it says there," it must not be AS. That is just one example from my own experiences though. There are many, MANY others.

Most other instances of doctors and counselors telling us "it couldn't be AS," were about another son, over a period of seven years, who insisted that HE didn't meet the broader criteria. What blows me away about that is that he not only DID meet the broader criteria, but also matched some of the more specific examples given in DSM-IV, to a TEE!

We had already given up ever getting a DX from anyone for him. Then, out of the blue, we were called to a special meeting at his school, where we were told his school psychologist had DX'd not only him, but also his younger brother, whom we had never suspected had AS. This, she did with NO prior knowledge of our suspicions.

To make a long story short, what we eventually learned was that the doctors who couldn't seem to see the AS we saw, simply were not as familiar with the condition as we were. We had actually studied if far more than most of them had.

Now, I do know (again - from experience), that if one presses the issue very, very hard, and don't take no for an answer, in general, one will be referred to an agency or doctor that specializes in Autistic Spectrum disorders. The problem is, most of us don't press the issue. Most, like us, feel that "doctor knows best," and if our concerns are dismissed, don't press any further. Add to that the fact that there are a awful lot of doctors out there (again - based on personal experience), who without intimate knowledge of AS, easily dismiss it thinking they know a lot more than they really do about it.

It is NOT because they are dishonest at all. I think it's just due to the fact that AS is SO complex, many professionals really do think they understand it, and maybe they do somewhat, but their understanding isn't as thorough as I believe it should be before they casually utter an opinion about a specific case. We aren't the only ones this has happened to. It also happened to a relative of my wife. He was actually DX'd many years ago, but went through years of denial based on other doctors later telling him he DIDN'T have it. THOSE doctors worked either in ER's, or clinics, and not one of them saw him more than once or twice for all of fifteen minutes or so. Now, I know that's an extreme case, but things like this can and do already happen. And our own personal experience, sadly, is not uncommon at all. I've not been on WP long enough yet to read similar stories, but I have been on some other forums, and have heard MANY similar stories from all over the U.S. in particular.

I DO believe that simplifying things WILL make it easier for many doctors WELL-VERSED in what AS really is, to apply the DX.

At the same time though, I also see the potential to make it far easier to dismiss it by other perfectly well meaning and honest doctors, thus inadvertently causing many who may very well have AS, and really need help, never to get that help. Possibly being misdiagnosed with other things, and getting the wrong kind of help which could actually be damaging.

In short, perhaps your own experience doesn't give you as much reason to suspect the new criteria may lead to more misdiagnoses than already exists as does my own experience. I have seen evidence of predisposition that has lead to delayed diagnoses, as well as one firm DX that was later doubted by the patient due to what I would consider some fairly careless remarks, and, possibly, one son whom I firmly believe should have been DX'd, but was not. We are about to have him evaluated again. The results from that should be interesting at least, and may possibly turn out to be enlightening if the next DX turns out to be positive.

I don't pretend to know what your own circumstances are, but I can see where someone who maybe didn't know anything at all about AS being told they have it, might have quite a more positive attitude toward favorable interpretations of DSM-V's criteria. Of course, I don't know if that was the case with you. I'm only juxtaposing.

If you [or one as described above] had been through and observed what I have for the past eleven years though, you might see the same potential for misdiagnoses that I see.

Perspective does have a lot to do with it. I wouldn't say what I've observed is necessarily the rule, but I would say (based on what I've heard from many others) that it is at least common enough to raise eyebrows where the proposed criteria are concerned.

To put it analogously, if every oil company follows well known rules of safety, safe drilling occurs, and everyone stays happy. It only takes one ignoring those rules, or overlooking them, to cause the biggest industrial/ecological disaster in history.

I for one don't feel comfortable at all simply putting faith in imperfect human beings to "make the right call." I'd much prefer the existence of firm and detailed criteria that even we mortal laymen can not only understand, but easily and quickly point to when they are not being adhered to.

My concern is the new criteria "lack of social reciprocity."

Most aspies have this to some degree, many females more than males. Females are already being underdiagnosed and I feel this will make diagnosis harder.

http://www.psychologytoday.com/blog/dsm ... mic-autism

This article disturbs me. They want to "contain the epidemic." There never was an epidemic. There were just more people being reliably diagnosed that won't be in the future.

Will Temple Grandin then be considered "cured"? We learn to adapt to brain differences that don't change. This makes no sense.

None of it makes sense, and I don't know what to do now. We can't even post comments to the dsm5.org website anymore.

The DSM-IV-TR said a lack of social reciprocity is almost always there in AS, it just differs from the type seen in AD. They define such as the one-sided and verbose way of social interaction. You just have to read the expanded text. They rightfully acknowledged with the new one that things were repeated in IV, i.e., criterions pointing to the same thing. They also say that the expanded text will be the main part of diagnosis where you compare the criterions to how they're written and explained in the text.

Temple Grandin still meets it.

I once had a conversation with Temple Grandin that was reciprocal. So, she wouldn't meet the criteria for "lack of social reciprocity," since that would mean absense of reciprocity in all situations and at all times.

The new criteria will narrow diagnosis and most AS people will not meet it.

Although I still sometimes talk in monologues, I can have conversations that are reciprocal. I used to talk a lot more in monologues when I was younger. Are saying that AS people who have learned some social skills like I have, will no longer fit the criteria for AS or even for being on the spectrum? That would be worrying if thats the case.

Yes. That's why I tried to post a link to my new petition to the APA to stop it.. but the site was running slow and I thought it wasn't posting, so I hit post 9 times and now I can't delete them! No one is looking at them because they think I am a spammer.. but I never got a message that it posted and it kept timing out.

Here is the link to my petition:
Petition-DSMV Criterion Unfair to Girls

What was it about? A single subject? I bet it was far more scripted than you realized at the time (she says she uses scripts for it all IIRC). I can answer questions and pose them, but this isn't social reciprocation.

Well, the DSM-IV-TR says that nearly all with AS have a lack of social reciprocity, but it's different to the marked social and emotional indifference to those with AD. So in reality, the DSM-V criteria are actually moving closer to how the -IV-TR explained it.

Is the criteria unfair to girls or to women? Maybe girls are less reciprocal while some women are more so because they have learned to compensate by using their personality? It could be correct that AS girls are indeed less reciprocal than NT girls.

That petition is ridiculous. If autistic girls mimic other girls I must be absolute s**t at it.

And hey, boys can mimic other boys or fictional characters.

Mimicking, which is "fake" social interaction, still isn't social reciprocation, even if it looks like it. That's why there's a whole heap of other criterion there you need to meet too; when you start meeting more and more, the professional can then see that you actually mimic others when questioning such. Also, professionals usually don't take you somewhere and see you interact with others, even for kids; they see how you interact with them. "Mimicking" can be broken easily with asking a totally unexpected question, for example.

I don't think people realize how this new criteria is going to affect them and future children being diagnosed. It says a LACK of social reciprocity--none. If you have any reciprocity at all, you may not be diagnosed. When I was first assessed, a dr called my roommate and said, "Does she have reciprocal conversations?" She said yes and so I was told because of that I "couldn't be autistic." At that time it wasn't a main, necessary criterion as it will be from 2012 on, unless we stop it.

It will be worse for females, but males will be affected badly also.

(I've had four assessments since saying I had Asperger's.. but I pity girls who are able to appear to be reciprocal when actually they are not.)